Thank you so much everyone for your input on this - I really appreciate it and it helps getting other people opinions.
I'm going to speak to my PTs when I next see them (the end of January) and ask them whether they think that the PT is making me worse and what we should do from there. I have been told SO many times by them that if I don't do PT, I will end up in a wheelchair and that PT is my best chance of getting better so I honestly don't know what to do and we are really confused!! The PTs claim to know about RSD and they have treated many other people suffering from RSD however they have admitted that they have never seen a case to the extent that I have it, with the myoclonic spasms, dystonia etc. They are always doing "Trial and Error" exercises to see what will work and what wont work and I think sometimes, they forget that it could actually make me worse instead of better.
Karen - Thank you for your input, I really appreciate it. When I went on the first agressive PT program, it really helped - it didn't take my pain away or anything but it got me walking for the first time in 13 months. About 2 months after I finished the first course of PT, I returned back and had PT to try and get rid of the Dystonia but it didn't work - i'm not sure why but the PTs didn't spend as much time with me as they did the first time - it was sort of like once they got me walking short distances, they lost interest. I am due to return back onto the program in January for my leg casting, then sent home and then returning back for 2-3 weeks PT to try and get my leg in a straight position. The thought of having my leg casted really scares me though. I have read lots of articles on the internet saying that in children, agressive PT is the way to go and it can put the RSD into some sort of remission in time and have spoken to many children that it has "cured" but that doesn't work in my case. The PTs in London are the best in the UK for treating RSD so I think they know what they are doing but I honestly don't know ... the whole casting thing just scares me soo much!!!!!!!!
Koala - Thank you so much for your input. I am so sorry to hear what problems your DH had from the PT - that is awful!
I have had hydrotherapy before but it didn't work for me at all (made me worse if anything) so the PTs wont go down that route again. I really appreciate hearing peoples input and seeing what they have to say as I am so confused at the moment - I guess i'll just have to speak to my PTs and see what they say when I see them next - I know that they will probably say that the PT will make me better in time so I just don't know what to do - it seems like a no win situation lol.
Thanks again everyone for your input - I will keep you updated and let you know what my PTs say when I see them next!